Introduction

Cardiomyopathy UK is conducting this survey to better understand the experiences and views of people living with hypertrophic cardiomyopathy (HCM), including both obstructive (also known as HOCM or HCM with obstruction) and non-obstructive forms of the condition. It asks about experiences of diagnosis, symptoms, care, and treatment within the NHS.

This survey has been developed by Cardiomyopathy UK and is funded by an unrestricted grant from Cytokinetics. Cytokinetics is a biopharmaceutical company that develops potential medicines, including treatments for hypertrophic cardiomyopathy (HCM).

The survey is for adults aged 18 or over in the UK who have been diagnosed with HCM within the last 10 years, as well as family members, friends or carers of someone with this diagnosis.

The findings will inform Cardiomyopathy UK’s policy and advocacy work, including submissions to the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) in relation to new treatments for the cardiomyopathy community.

Cytokinetics will have access to anonymised survey responses, which may be used to support submissions to NICE and other healthcare authorities to inform the assessment of new medicines in future. No information that could identify you will be included by either organisation.

Taking part in this survey is voluntary, and all responses will be treated in confidence. For more details on how we keep your data safe, you can read Cardiomyopathy UK’s Privacy Policy and Cytokinetics’ Privacy Policy.

The survey takes around 15 minutes to complete. Please submit your responses by Friday 10th April.

If you have any questions about the survey, please email policy@cardiomyopathy.org
Thank you in advance for your time.

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